Has anyone ever had to give up work due to diabetes ? I’ve had type 1 for 36 years and have many complications and am currently struggling severely with daily neuropathy pain, diabetic gastroparesis, endometriosis and severe anxiety and burnout. I’m only 43 and work part time. My workplace is very supportive but the daily pain and unpredictable blood sugars are taking their toll and I no longer feel able to be productive at work. I’m not sure what to do.
Any experiences or advice ?
I would also like to hear what people have to say about this. I’m 32 years in, 58 years old. Work full time. Have had eye issues. Most days I’m good but when I’m bad, it’s really bad. Would like to retire soon and just do consulting or special projects.
I am so sorry you are having such a hard time. It must be so frustrating to want to keep working but the body is saying no more.
I am 47 years in and have been very blessed to have no problems. But one very helpful thing to have is FMLA. First did the paperwork so I wouldn’t get dinged for being late when I couldn’t drive due to a low blood sugar. I have also used it once in awhile when I have one of those days where working around the blood sugar issues would be counter productive. There are many different programs to help people keep working if that is the way you want to go. Your HR department should have any information you need.
If you do want to call it quits, you probably could. I don’t have a lot of info on retiring early but social security office should be able to help. Good luck and I hope you find a good fit!
I was diagnosed with juvenile diabetes, now called Type 1 at 10 in 1962. Had my first job, 25 cents an hour, at 11. Worked to 60, retirement was not diabetes related. My mom was a saint who pushed me to be a real kid, not a diabetic kid.
I was always upfront about my issues: grade school through every school, job I did. Issues? Sure. But everyone was schooled on what to do. EMTs at work? Yep, as I provided information to help my coworkers understand. Everyone knew where my juice was located, how to contact my emergency person.
And I was never afraid to ask for an accommodation. That’s key. Nothing huge, but some jobs even having food outside designated areas not allowed. Never denied, even before ADA.
I traveled all over the world and throughout the U.S. for business. Always very prepared. Did well…not always perfect, but I survived.
Amelia3, I get your concern. You can only do what you are able to do. I was lucky. I also think that pumps and CGMs have caused being diabetic to become the focus of our lives. We obsess. Life used to be less worrisome.
Good luck. Ask for help.
I have had type 1 diabetes for 52 years and I still work. I have been all over the world as a student, though that was possible only because my studies occurred mainly in the pre-strict blood sugar control era, when there was less of a threat of hypoglycemia and management was very much easier.
The only useful treatment for gastroparesis is Domperidone, which promotes digestion and eliminates the unpleasant symptoms of gastroparesis, though it does destroy the patient’s libido. For diabetic neuropathic pain, the drug, Benfotiamine, is remarkably effective, and if ever I get shooting pains in my feet, I just increase the Benfotiamine dose and the pain is gone. It is regarded as a supplement so it can be obtained without a prescription. Armed with Domperidone and Benfotiamine, you should be able to keep working.
I left a job in early 2k because I just couldn’t keep the demanding hours and workload with impaired Glucose. I suspect the very same job was one of the triggers when I initially presented.
Unfortunately I developed a heart arythmia from domperidone so had to stop it. It was a good treatment
I agree. Type 1 technology although great can make diabetes our obsession in a way.
Have you tried blending up your food to help with the GP? I have endometriosis and I use chaste tree berry capsules along with Sabina (a homeopathic medicine,both used as directed) and together with the occasional Advil during my period and I can function pretty much normally. My grandmother had her uterus removed to get rid of endometrial pain and if not for these simple and affordable remedies I can understand why she did it.
I eat fairly bland food like toast and crackers and rice and vegetables. Blending or puréed food may be a good idea.
If you can’t use Domperidone to treat your gastroparesis, you can try eating only pureed foods, which are the perfect solution for many patients. Typically, gastroenterologists tell diabetics to eat many small meals a day to deal with the symptoms, but they don’t seem to understand that many small doses of fast-acting insulin, each of which will last for six hours, will produce too much overlap of doses with a resulting blood sugar chaos for this plan to be workable.
First, I belong to a few email lists for work from home jobs. Some of them are good (you have to watch for scammers). I have some excellent resources.
The other day I was filling out an app, and they had a block of those government questions that are optional. They indicated that to the government, diabetes ls listed as a disability. Even if you are not eligible for disability, it was still listed as one on the list. I had never seen that before. ? .
I know for myself, I run a struggling business, husband has a new fairly serious illness and I have a 92 yr old parent to care for. I am about to lose it from stress. I just keep looking at the work from home jobs. And hoping and praying. Because I cant imagine having to go in to work. I had laser surgery for retinopathy all last year. No employer would like having someone absent for all the weeks I was unable to see…
Sorry you have so much going on Laura. It’s tough. I had heaps and heaps of laser years ago for retinopathy. That’s when I went part time with my job as I was absent so often. Now with all my current issues I’m still missing so much work even being part time. Work from home would be helpful if it was something that could be done successfully and not add to the stress.
@Laura_S, I spoke about this the other day with someone who had chronic illness…just to get their opinion. He was of the opinion that its better to NOT check that disability box and hope that if problems start to arise, you may have some advanced warning and can fill out the disability form at that time. You may not be eligible for protection until you do, according to some posts/opinions Ive read on on Tu. So, its a bit tricky.
Yes, I have had to give up jobs - sometimes willingly because it was the only practical solution, and sometimes I was asked to leave over fear for the potential of a workman’s comp claim (which seems to be a heavy duty employer fear). I have also had fellow employees offer to go above and beyond the call of duty to allow me to stay. I had issues prior to receiving my epilepsy diagnosis. Now, prior to that diagnosis, everything got blamed on diabetes, so there was a gray area between the 2 conditions that took some effort and time to figure out.
But, I have never had to give up work, completely, in a permanent way. Generally, things sort themselves out. I am a 25 year diabetic with no complications, as of yet. I don’t know very much about nephropathy or the experience of living with gastroenteritis. But, I have had burnout. I found that I wanted to do physical labor for a few months. It helped me sleep at night. I didn’t have to talk to anyone because I worked alone. I found that I was able to process a lot of information while working because my work was physically demanding, but not mentally demanding. A quiet, solitary environment helped because I was ultra jumpy. That was a good fit at the time.
I would ask, @Amelia3, do you imagine this as your new, permanent, physical condition? Or, something that you may need to trouble shoot for a few months and then, possibly, return to your current job? I’m guessing the burnout might require a 3 month break. But, it could take longer.
I agree with accommodations. I’m in the process of filing for ADA accommodations for the first time (31 years T1D, I’m 39). Just a little flexiblity in my schedule, as the new supervisor adheres to rigid schedules.
Any way your part time hours can be flexible? Or work from home options? Or maybe take extended leave to help with the burnout aspect? I’m sorry to hear about all the issues!
Something you might also consider - for many years I thought I had gastroparesis as my food took forever to digest and I suffered from heartburn, acid reflux, constipation and belly bloating. I was prescribed all sorts of medication to take care of it - some work better than others but none of them resolved it. A change to a new doctor who said it was ridiculous to keep doing the same tests and expecting different results did some different tests and voila - it was not gastroparesis - it was pancreatic insufficiency. Along with not producing insulin, my pancreas was also not producing digestive enzymes. So, the addition of a high lipase and other digestive enzyme before each meal with high loads of probiotics just before bed and all of the problems disappeared. There are commercially available digestive enzyme that work well - Enzymedica makes some excellent ones including Lypo Gold. You might want to try adding a digestive enzyme with each meal before you eat and see if that provides any sort of relief. Also, do add in probiotics at nighttime to allow your own natural biome a chance to re-populate. You need at least 13 billion to colonize.
Every patient with a suspected diagnosis of gastroparesis should always have the gold standard taste for it, which involves eating a small meal which has been radioactively labeled, and then having its passage through the digestive system tracked and recorded. If it is unnaturally slow, the diagnosis of gastroparesis is confirmed.
OK, thanks. It was a paying job moderating for a health forum like this one so maybe they would be understanding?
Most definitely. No one can ever relate either. No one understands how sometimes I just feel “weird”. I’m a police officer and use to get held over at work. It was the worst